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Gastropareses - Carers UK Forum

Gastropareses

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Hi I'm New to this forum. My 21 yr old daughter has diabetes type 1 & gastropareses & also borderline personality disorder. I'm at my wits end. Nobody I know has any idea how tough this is for our family. She is my only child but has two half older sisters who don't live close by. I just need someone to relate to. Is there anyone else that has similar problems to me. Thanks Tracy
Tracy, hi and welcome.

I'm always astonished at my own ignorance when I read posts like yours - I have NEVER heard of Gastropareses, and I am going to look it up now....

,,,,,,,

OK, so have now googled gastroparesis, and it seems to be a complication (sometimes) of diabetes (presumably that is so in your daughter's case), where the stomach can't easily empty to pass food and liquid on down to the lower gut (I haven't found out why yet!) (sometimes nerves can be damaged, but that might not be the case if its diabetes-related??), so you get pain and bloating, and then sometimes regurgitation as well.

Tracy, can I ask which of the two overall problems your daughter has - the physical diabetes/gastroparesis OR the mental/emotional BPD - is the 'worse' for her and you?

Do you feel that if you were given the choice of fixing 'one' of them, which would it be?

I ask because it can be helpful to try and see where the 'main focus' of your efforts to improve her quality of life (and therefore yours, sigh) should come.

Do you feel that the diabetes (and GP) is sufficiently well managed, or is it causing major problems?

Is she getting any psych treatment (whether meds/therapy or a mix of both) for her BPD? I do hope so!

Do bear in mind that adolescence is often a very, very 'unhappy' time for many young folk (personally, I wouldn't go through my years of 15-25 again as they were for all the tea in China!). This is not to 'discount' that there is 'real' mental illness at that age (not at all!), but to point out that sometimes EVEN IF there were no 'actual' MH problems, she would STILL be 'unhappy'. Add in a life-long physical illness that she will have to manage as best she can for all her days (though see below), and that can really adversely affect the mental state of a young person. It's the horrible 'why me? All my friends - everyone else I know! - is FINE, so why is it ME who gets dumped with diabetes????'

That said, although, at the moment, diabetes is incurable, and has to be managed, never, please give up the hope yourself, nor your daughter for herself, that medical science may well achieve a cure within her own lifetime. What she is 'stuck' with now, may not last 'for ever'. That hope should always be in the back of your and her minds.

And ditto, too for her BPD. It used to be believed that all personality disorders were a 'given' and therefore 'incurable'......BUT, the tide of psychiatric opinion seems (thankfully) to be changing on that, and that with the correct treatment, personality disorders CAN be 'reversible' and 'overcome'. Again, never give up hope on that front.

Things MAY get significantly better for your daughter on BOTH the physical and mental fronts, and that is really something to work towards.

How do you think SHE copes with what she is up against? Her attitude is key.....
Thank you so much for replying to me. It's very difficult to know which is worse but I think the gastropareses is just the worst because it affects her insulin levels which affect her moods. Also her teeth are being affected by the acid. There are a lot of underlying anger issues also. She was diagnosed at age 9 with diabetes after 4 yrs of symptoms , tests were done but always came back negative. She was then bullied continually & her father died when she was 12. Two yrs later she completely went of the rails and turned to drugs. Refused to go to school & mistreated her diabetes. I was continually helping the police track her down. Eventually social services advised me to temporarily let her go into care. Hoping shock tactics would work. This nearly broke me. I befriended her foster carer & together we got her off drugs & semi stable so she came home at 16. She then got involved in an abusive relationship & the gastropareses started but took another few years to diagnosed after numerous hospital visit s & stays. She's a very angry person and has explosive anger tantrums. She had cambs before 18 and now has adult services. But a lot of time she uses excuses not to go. She stays in bed all day & night, only coming out when she wants to. There is so much more but this is some of it. . Thanks for taking time to read this. Tracy
Hmm, so I presume she is angry because (a) she has diabetes and (b) her father died.

Is that right?

I'm not suggesting that these are 'trivial' things by any means, but.....

BUT.....

Many children have FAR worse to cope with. FAR worse.

OK, so my son was three years older when his father died of cancer (very suddenly, within six months of diagnosis, out of the blue, as terminal - ie, one minute we were having a perfectly 'normal' life, about to have a lovely half term break away by the sea, and the next my husband was having major surgery, which he survived, only to die of secondary cancer some months later, against expectations).

My son has survived this appalling loss brilliantly, and is now a young man with great scholarly achievements, good career prospects and a lovely steady girlfriend he is planning to marry at some point. Life is 'good' for him - despite that he will never see his father in this life again.....

I say this to show it is not the bereavement itself which causes problems in a child's life, but their reaction to it.....

As to the diabetes, yes, it is a grim thing to have, but it is NOT 'terminal' in itself - it CAN be managed and survived, and, as I said originally, there is ALWAYS hope that one day within your daughter's life time, it can become curable. Many children face FAR worse - they have cancer, they lose limbs, etc etc. With 'courage' something like diabetes - however horrible to cope with - need not be 'traumatic' of itself.

I guess what I am trying to say is that the loss her of your daughter's father plus the diabetes 'should not' have had the dire effects on her life, and that the reason she is in such a 'mental mess' is more likely to be caused by mental illness only EXACERB ATED by her bereavement and illness????

Would you think that is an accurate analysis??? That her anger and all that goes with it is more likely to be caused by mental illness rather than physical illness or grief??

IFFFF that is so, then I would think that focussing on her mental health is the 'key' to improving her state of mind???

Just to ask, did she ever have actual bereavement counselling when her father died? This was available to my son (via a charity) but he chose not to, and not having it does not 'seem' to have been a problem for him, but each of us is different, so maybe your daughter might find it helpful?

If I had to ask 'Which makes her angrier? Having diabetes or not having her dad?' Which would you answer? Or do you think there is 'something else' she is angry about?

I hope I'm not sounding unsympathetic - I'm just trying to get a handle on WHY she is so angry, and how that anger impacts her mental state.

I'm sure your only hope and longing for her is to be 'mentally' well again, so that 'even if' she is still beset by her diabetes and all the adverse 'side effects' of it (eg, the gastroparesis), she can still find ways of enjoying life, and doing something fulfilling with it.

If nothing else, being mentally ill is such a 'waste' of a life..... (that's an understatement, by the way!)
"She stays in bed all day & night, only coming out when she wants to"

What motivates her to get up in the end?

Do you think you may be making life 'too easy' for her ('over-compensation' by parents when their children are suffering, for whatever reason, is so so common - understandably so, for we fret endlessly over them - but may not be the 'best thing' for them??).

Who makes her meals, who does her laundry, who supplies her wifi (as I'll take a bet she isn't in her room reading books all day long, but 'online' in some fashion!).?

Do you require her to do any chores at all? (I do hope so!)

Do you ever feel she is 'punishing you' for her own unhappiness???? (again, very common, sigh....)